I Want an RA-Bio-decoder Ring
Recently I had the great opportunity to attend a meeting where many different facets of healthcare were represented. There were doctors and pharmacists and practice managers and people who did insurance authorizations. And there were patients like me. The meeting wasn’t just about RA and so when I ran across another individual with the designation of “patient” on her name tag, I asked about her condition. “Psoriasis,” she gushed, “but you can’t tell anymore.” She showed me her forearms. One looked completely normal and the other had the faintest pink outline showing where the psoriasis had previously plagued her. We were able to talk for a few more minutes about her treatment plan and the great progress she’d made. I was (and still am) thrilled for her, as I am for anyone that finds something that works.
Then, on the way back to the airport when I had a minute to reflect on the day, I’m embarrassed to say that the envy set in. I wasn’t so envious about the fact that she had found such a wonderful treatment. It was about the fact she knew the treatment was working.
Thinking about her progress on her treatment plan it must have been great to be able to actually see that the treatment was working by the fact the psoriasis patches were getting smaller. One of the frustrating things about RA is that it can take months for a treatment to reach full effectiveness and often there’s no way to visibly tell whether or not it’s working. Many times we have to rely on labs and physical exams by our doctors. Even when we are feeling better, there might be continuing joint damage that can only be seen by X-ray or other imaging.
A day dream
So this is my day dream. Well, my first day dream is a cure for RA that is cheap and has no side effects. But, second to that, I’d like an RA meter. It would be really cool if it were one of those hand-held scanners they use on the sci fi movies. But there are things like glucose meters for diabetics and even color-changing strips used to take people’s temperature on their forehead. You would think that with all the advanced technology out there, we could figure out some nifty, easy-to-use device that could measure RA activity. There are existing things like thermo-imaging scopes that might be able to be adapted to read inflammation/heat/swelling in joints. And while I like things without needles, surely there is some home blood test that could be developed.
A way to quantify what's going on inside our body?
It’s not only for when we want to track new treatments, we want to know if a treatment is becoming less effective. I have been on several biologics and there are times that I thought I waited too long to talk to my rheumatologist. If I had a super RA-bio-decoder ring that could quantify what was really going on, it would help make those decisions easier.
In the meantime, I’ll continue to use some of the relatively accessible symptom-tracking apps on my iPhone. But those are totally subjective and I really, really want an RA-bio-decoder ring.
How often you do experience an unexpected boost of energy?